Last spring, the NVCBR team wrote an extensive U54 grant to advance the diagnosis and treatment of ME/CFS through a collaborative research center to study ME/CFS with an emphasis on biomarker discovery and dysregulation of the gastrointestinal mucosal immune system. Although NVCBR was not chosen as one of the three research center sites, we will continue to pursue these critical areas of research.

Like the many other researchers in this field who were not chosen by the NIH to receive grant funding, NVCBR researchers must rely heavily on private donations to keep their critical research studies moving forward. Included in NVCBR’s list of promising studies are plans to create a mouse model of the disease and a gut study to determine the role of the mucosal immune system and the microbiome in ME/CFS. These studies will be integral in determining which treatments would be most effective before conducting human trials.

Significantly, past NVCBR research studies have resulted in the discovery of a unique set of antibody biomarkers that were found to identify ME/CFS patients from controls with a high degree of sensitivity and specificity. This signature could lead to the development of the first clinical diagnostic blood test for ME/CFS. NVCBR’s collaboration with Arizona State University researchers brought expert scientists into this field who had not been involved in this disease before our collaborative antibody study. Studies are continuing in an effort to identify the most important factors driving the antibody responses. This information will add to our understanding of the causes of disease and to better treatments.

Open dialogue between research organizations remains a possibility and a dream of those whose loved ones are still suffering from lack of effective treatments and the medical ignorance that continues to surround this disease. We know that it is really only a matter of time and will power. But time is passing quickly. It is our greatest hope that researchers around the world will agree to come together to form a world-wide alliance. If and when this occurs, we will be able to achieve our goals much more quickly and with much less cost to each organization.